I'm really getting very frustrated as i'm trying my best to find a fundraiser who will be able to assist me in raising funds for Olivia's upcoming surgery, but no one seems to be qualified or have done anything like this before here in South Africa.
I really need to raise the money quickly and time is running out.
I can't tell you how i've been dying to tell everyone about our news, but i was waiting on confirmation from Dr Paley in America before i sent out the note to all our family and friends. So here goes.
Choosing the type of surgery that my daughter will have to face seems like a daunting task. For those of you who have been faced with the choice of bone lengthening or amputation, what did you ultimately decide to do for your child? What led you to that decision? Are you happy with that decision or do you wish you had chosen a different option? (My daughter is 6 months old and has been diagnosed with PFFD in her left leg.)
It's been a while since i've actually taken time to post something, but life's been hectic as i'm sure most parents with PFFD babies know by now. Olivia's surgery will be taking place between April and June 2010. I just can't believe that the closer the time comes to surgery the more unprepared i'm feeling. I'm reading as much as i possibly can, but still i feel like i'm not really finding someone who can tell me what to expect when my baby girl comes home from the hospital.
My daughter, Olivia's, surgery is scheduled for early 2010 and i'm very nervous about it. Could anyone give me some information about super hip and super knee surgery. We have a fantastic doctor here in South Africa. We were hoping to bring Dr Paley to South Africa to perform the surgery, but due to exceptionally high costs it seems impossible. What i really need to find out is what can i expect before and after the surgery. How long is the recovery.
Hi - We went to see Dr. Paley in October for our son. He is almost 6 months old now and has class D pffd affecting his right leg. Dr. Paley said that lengthening is not an option for him. He said that our best option would be a brown rotationplasty. I was just wondering if anyone has heard of this or has had the surgery. I am trying to get some information on what when well with the surgery as well as what could go wrong. He said that the earliest he would do the surgery would be at age 2, so luckily we have time to do a lot of research.
I just received a letter from Sinai Hospital in Baltimore, MD. The letter states that as of June 30, 2009, Dr. Dror Paley will be leaving that hospital. All other surgeons are staying at the hospital. The letter does not state where Dr. Paley will practice after June 30, 2009. But it says that if anyone has questions or concerns, they should contact one of the physicians who will remain at Sinai or Justina Starobin, Director of the Rubin Institute. You can also email them at ICLL@lifebridgehealth.org.
